Mind Matters - Multiple Sclerosis Society of Canada

Mind Matters
MS can bring changes to mood and memory.
The good news is both can be managed.
"My past is slipping away from me as though it
never was. Names, faces, memories, lessons I
learned, things I was told, experiences I lived, people
I knew, words I spoke… They're all blurring
together and wiping each other out. MS or age?"
It's a private moment, a quiet moment, a glimpse
into Chrystal Gomes' mind as she records her
thoughts and experiences in her journal. Chrystal,
38, also uses the journal to help determine if her cognitive
and mood changes could be MS-related or not.
She's in good company. Researchers are posing
similar questions, and they are discovering that over
40 percent of people with multiple sclerosis may
have cognitive impairment, usually mild problems.
Also, 50 percent of people with MS experience
depression. Research is validating the anecdotal evidence,
long supplied by people with
MS, that MS can affect not only
the body but also the mind.
by
Avril Roberts
This shift in perspective traces back to the
mid-1980s when magnetic resource imaging (MRI)
was introduced into clinical use. "Suddenly, you
could visualize the brains of MS patients with
greater sensitivity and see big plaques (lesions) in
the brain," says Dr. Anthony Feinstein, associate
professor of psychiatry, University of Toronto, and
a practising neuropsychiatrist at Sunnybrook and
Women's College Hospital.
"When researchers could see the degree to
which the brain was involved, they began questioning
how this would affect people intellectually.
From there, they started to explore cognitive abnormalities
in much greater depth."
Dr. Jennifer Rodgers is a clinical psychologist
with the University of Alberta Hospital in
Edmonton. Eighty percent of her outpatient work is
with people with MS. She recalls, "When I started
18 years ago, neurologists were still saying there's
no cognitive involvement in MS. Now with MRI
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This article originally published in MS Canada, August 2004, p. 1

and sophisticated neuropsychological testing, we
estimate the prevalence at 43-59 percent."
"Our recognition of this is good news because
people used to complain that they knew something
was different, something was changing, especially
when it comes to memory, but their comments
would be downplayed and people would go away
feeling unheard. Now we can address their concerns
head on."
Dr. Rodgers says many of the community neurologists
who specialize in MS now refer clients to
her at the time of diagnosis. She sees her role as
helping newly-diagnosed people put matters into
perspective. "Letting them know that their fears
are legitimate but if they give
themselves time, learn about
their MS and go on the medications,
they may become
more optimistic. I help them
figure out where they are
emotionally."
Ten years ago, Chrystal
Gomes could have used this
kind of help. She was lying in
a Toronto hospital bed laughing
uncontrollably. "I felt on
top of the world. I was going
from one extreme to another.
One minute, crying like I had
lost someone close to me;
the next minute laughing
hysterically."
"People who came to visit were commenting
on how they came to cheer me up but I was cracking
jokes and cheering them up. There was a kind
of craziness about it. I felt I was going bonkers." A
few days later, Chrystal was diagnosed with MS
but no one told her there could be a connection
between her mood swings and MS.
MS can influence the mind's ability to store,
organize and recall information and the way the
mind regulates moods and emotions. Cognitive
changes in MS usually show up as memory problems,
a shorter attention span and a slowing down
in the time it takes to process information.
The most common complaint is memory problems,
especially with short-term or working memory,
as in the ability to remember a sentence that
has just been read. However, it's not the same kind
of memory loss that occurs in Alzheimer Disease.
"You rarely get the kinds of cognitive pictures you
get in Alzheimer Disease," says Dr. Feinstein. "The
presentation of cognitive problems in MS is fundamentally
different."
A small percentage (about 5 to 7 percent) of
people with MS may have severe problems with
thinking, reasoning or judgment and not realize it.
Family members, co-workers and friends may be
the first to notice something is wrong. As with the
physical symptoms of MS, there is great variability
in the onset, duration and experience of cognitive
symptoms.
Cognitive problems in MS can be directly correlated
to lesions in specific areas of the brain. They
are a function of the illness, not
a reaction to having MS; however,
there are instances where
problems with memory, attention
and focus may be related
to depression, so it is important
to get a proper assessment.
Neuropsychological testing
is the gold standard for
determining if someone has
cognitive impairments. It is an
extensive process of up to five
hours of tests examining various
aspects of brain function,
such as recall and attention. A
neuropsychologist usually
administers the testing.
There are no current medications for reducing
cognitive problems in MS. However, researchers
are investigating the effectiveness of donepizil
(Aricept) in improving memory function. They are
also studying the effects of modafinil (Alertec) on
alleviating attention problems. (Aricept is used to
improve cognitive function in people with
Alzheimer disease. Alertec is prescribed for the
treatment of MS fatigue.)
The donepizil study involved 69 people with
MS with mild cognitive problems: 65 percent of
those treated with donepizil said their memory had
improved, compared with 32 percent of the people
taking the placebo. Memory improvements were
still noticeable even after six months.
In the modafinil study, 22 people with MS with
attention problems were given modafinil in combination
with interferon beta-1a. Their neuropsychological
test results showed significant improve-
This article originally published in MS Canada, August 2004, p. 2

ments in complex attention, information processing
speed and working memory. People also reported
improvements in their quality of life. These encouraging
results will likely stimulate further research in
this area.
In the absence of medications for their cognitive
problems, people with MS find ways to compensate
or make adjustments. An occupational therapist can
provide assistance with developing rehabilitative
strategies for coping with cognitive problems.
Chrystal Gomes writes notes to herself or leaves
phone messages as a reminder of things she has to do
and people she's going to meet.
Gloria Kabele of Vancouver takes
frequent breaks, especially when
she's writing articles or presentations.
"Just so I can have fresh
eyes when I return to whatever
I'm working on."
When it comes to mood
changes in MS, the most common
experience is depression – major
depression, not just a fit of the
blues. Far less frequent is another
type of mood change called mania
– periods of excessive giddiness.
A small percentage (about 10 percent)
of people with MS may have
bouts of uncontrollable laughing
or crying.
The classic symptoms of
depression in MS are irritability,
anxiety and persistent sadness.
A family doctor or neurologist
can diagnose depression based on
the signs and symptoms.
The fact that people with MS
are five times more likely to experience
depression than other people
may be attributed to a variety
of causes.
Brain lesions: There is now firm evidence linking
depression to the presence of lesions in particular
regions of the brain. Medications: People may
have adverse reactions to the steroids that control
inflammation or the disease-modifying interferons.
Underlying psychiatric illness: A complete assessment
may be in order. A psychological reaction to
having MS: Dr. Rodgers says this is likely the number
one reason.
"Depression can come initially with the loss of
one's perception of health, and it can come later on
when the reality of physical loss adds up."
Some people will have experienced depression
long before their MS diagnosis. "I've battled
depression most of my life," says 50-year-old
Gloria Kabele. "Looking back, I wouldn't say it
was initially related to my MS because there were
other issues. But certainly getting a diagnosis of
MS contributed to the depression I had fought all
my life."
Whatever the cause, depression in MS can be
treated effectively through
drug therapy and psy-
Coping tips for memory and
attention problems
Focus on what you can do, not what
you can't.
Try to be patient when it takes you
longer to do simple tasks.
Take notes. Write things down
whenever possible.
Keep a journal or diary.
Use post-it notes, notepads, wipe-off
boards.
Embrace technology. Use electronic
organizers, email, voice mail, palm
pilots.
Split information into manageable
chunks or categories.
Try to do one thing at a time and cut
out distractions.
Take frequent breaks.
When introduced to someone new,
repeat the person's name and use it
in conversation.
Keep a pen and paper by the telephone.
Establish routines and stick to them.
Be honest about memory problems.
Try to stay calm when memory fails.
chotherapy. Physicians can
prescribe antidepressants
such as amitriptyline
(Elavil) and sertraline
(Zoloft). Psychologists recommend
cognitive behavioural
therapy (CBT) as the
therapy of choice for reactive
depression. CBT is a
short-term, time-limited
therapy that focuses on
changing hopelessness and
negative thinking.
Gloria promotes positive
messages when she
counsels newly-diagnosed
people, in her capacity as a
MS Society of Canada
volunteer. "I try to emphasize
that MS is what you
have. It's not who you are.
I also encourage people to
honour themselves and
love themselves and not
think they're less of a person
because they have the
disease. To give themselves permission to have
MS and to deal with it in a way that works for
them."
What works for Gloria is to "have a pity party
and then move on." This philosophy has brought
her more good days than bad. She is also open to
exploring alternative and complementary therapies
– reiki, reflexology, vitamins and nutrients, diet
modification – and particularly enjoys the mental
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This article originally published in MS Canada, August 2004, p. 3

and physical focus and the sense of control that
yoga provides. She sees the scientific interest in
how MS affects the mind as a welcome and longoverdue
recognition that the body is more than a set
of physical symptoms.
For Chrystal Gomes, the
breakthrough was a huge sign
that read: Live large or go
home! Chrystal saw that sign
each day in the final stretch of
an intensive eight-week selfdiscovery
course. "I knew then
that I had been living very small
all my life, as a very negative,
depressed and introverted person.
I realized I had to take a
step to change and look at life in
a different manner. I had been
focusing on negativity but now I
had to do the opposite and go
the positive way."
She has never looked back.
She is living her dream of
becoming a comedian, refining
her act at the American Comedy
Institute in New York and performing
at a Toronto comedy
club, as well as at corporate, private
and charitable events in
Canada and the United States.
She uses linking words to associate
one joke with the next,
writes key words on cue cards
and tapes her performances. Her
next goals? To do a one-woman
comedy show and take on a permanent, part-time
job.
Chrystal jokes openly about her MS on stage
and says, "I'm glad it's okay for us to talk about
how MS affects the mind because there's always
Coping tips for
depression
Give yourself permission to feel
frustrated and angry.
Learn to recognize the vital connection
between your thoughts and
emotions.
Surround yourself with positive
people as much possible.
Do volunteer work to take your
mind off yourself and to feel useful.
Laugh at yourself.
Set aside a set period of time to
feel sorry for yourself, then get on
with things.
Be aware that you have choices
about how your handle MS and its
symptoms.
Learn what you can about MS and
the available treatments.
Share information with your partners
and family.
Try to get some exercise each day.
Know your rights and responsibilities
with respect to work accommodation.
Communicate. Be honest about
your fears and concerns.
Challenge yourself to do things you
never dreamed of.
been a stigma about mental disabilities and depression.
It's wonderful that this is being seen to and
researched and acknowledged. It will help us feel
less alone."
Adrian Sivell in Toronto thought freedom was
zipping around on a scooter.
That's before he took up sailing.
Sailing has helped blunt the
anger and denial Adrian used to
associate with having MS.
Formerly a keen swimmer,
windsurfer and canoeist, Adrian
had given it up all due to his
changing physical abilities. On
the advice of a friend from his
support group, he signed up for
disabled sailing and rediscovered
his love of water sports.
"Sailing gives me an amazing
sense of freedom. There's no
machinery or wheels, just the
wind, ropes, sails and water
splashing and flowing around
the hull. The boat goes where I
want. I'm in the cockpit with a
silly grin on my face."
Participation in the 2003
Mobility Cup regatta for disabled
sailors across North
America gave Adrian a feeling
of belonging that he hadn't
experienced in a long time.
"Sailing has given me a new
perspective on life. It's allowed
me to meet many new people. It
gets me out into the sun and the fresh air. The peace
and serenity from sailing have spilled over into the
rest of my life."
Avril Roberts is a Toronto-based health writer with
an interest in neurological disorders.
This special insert was made possible through an unrestricted educational grant from
To read more about emotions and cognition, see the special issue of MS in Focus (Issue 4, 2004) available
on the MS International Federation website. Go to www.msif.org and then click on Publications
This article originally published in MS Canada, August 2004, p. 4